In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:
1. When will you be done with treatment?
The answer is never. We will be in treatment until we die. Even if the magical NED status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.
2. I thought breast cancer had a cure?
You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?
3. But you look healthy?
When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.
4. But you got the “good cancer?”
HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?
5. Men don’t have breasts, they can’t get breast cancer?
Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.
For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.
For those who are waiting for details on me:
My consult with the radiologist regarding brain radiation is on Friday the 16th, after I see my oncologist, I will still have my Perjeta/Herceptin infusion as things below the neck looked mostly stable. I had some new lymph nodes come up that we need to take a look at. I am going to try to start looking for trials as soon as we get these radiation thing done and over with. <3